Sarah Today
Sarah Before Diagnosis
I am changing places with Susan today. She goes home and I will be at BCH. Susan has been at BCH for 3 days and she needs a break.
The 7 children at home are doing OK, but I think they could really use more routine in their lives. Hopefully, routine will return in the near future. I do not want to just say “they’ll be alright” or “they can tough it out”, because how they are experiencing all this will have a lasting impact on their future. Susan and I are trying to involve them with visits to see Sarah and our going back home when possible. This is definitely a strain on our family and having Susan’s parents helping us has made all the difference. We are so grateful for their tremendous support.
We are still experiencing a mix of comfort and good news along side concern surrounding Sarah’s physical condition. The doctors assure us she is doing well at this stage. I acknowledge the clinical progress made, but she looks and feels physically shot and is sleeping most of the time now. The nurses tell us the constant sleeping is normal. I’m really hesitant to claim BMT victory yet, but I’ll quickly acknowledge God’s graciousness in saying “yes” to our and many others prayers so far. I would ask you to continue humbly and fervently praying for Sarah’s return home and complete recovery.
Sarah is sleeping through the night (and most of the day). Last night she sort of moaned or whimpered a lot. That kind of makes it hard to sleep when you’re on “hospital duty”.
Sarah is still getting platelet transfusions and nose bleeds. The doctors have determined that the swelling, and low oxygen saturation while sleeping, is due to reactions from the blood product transfusions. We are going to reduce the red blood cell and platelet transfusions to the absolute minimum we can manage. This should minimize her swelling and her low blood oxygen readings when she sleeps. It will also reduce her bodies’ likelihood of growing dependent on the transfusions and lengthening the time it takes for her body to do the heavy lifting.
We don’t hear anymore talk about VOD, so we think that scare is behind us. We will check on her bilirubin count later today though. Sarah is only slightly puffy from fluid retention and she hasn’t had a fever for several days. Please keep praying on this one.
The assessments of her CAT scans last week came out clean. No issues with her lungs and nothing negative showed up from her head scan.
Sarah’s ANC was up to 270 today. That was awesome news. That’s up from 150 last Thursday. We need her ANC to be above 500 for 3 days to be a candidate to leave the hospital. Her white blood cell count was also up (490). Now that it’s above 300, they’ll check her ANC every day.
I attached a graph of Sarah’s WBC and ANC progress to date. Sarah’s engraftment looks like it began sometime mid-last week. Click on the image at the bottom to see a larger version.
The targets for Sarah to go home:
1. ANC >500 for several consecutive days
2. Eating and drinking “enough” on he own
3. No longer dependent on intravenous drugs for pain management
-Ben
Matt 14:35
The 7 children at home are doing OK, but I think they could really use more routine in their lives. Hopefully, routine will return in the near future. I do not want to just say “they’ll be alright” or “they can tough it out”, because how they are experiencing all this will have a lasting impact on their future. Susan and I are trying to involve them with visits to see Sarah and our going back home when possible. This is definitely a strain on our family and having Susan’s parents helping us has made all the difference. We are so grateful for their tremendous support.
We are still experiencing a mix of comfort and good news along side concern surrounding Sarah’s physical condition. The doctors assure us she is doing well at this stage. I acknowledge the clinical progress made, but she looks and feels physically shot and is sleeping most of the time now. The nurses tell us the constant sleeping is normal. I’m really hesitant to claim BMT victory yet, but I’ll quickly acknowledge God’s graciousness in saying “yes” to our and many others prayers so far. I would ask you to continue humbly and fervently praying for Sarah’s return home and complete recovery.
Sarah is sleeping through the night (and most of the day). Last night she sort of moaned or whimpered a lot. That kind of makes it hard to sleep when you’re on “hospital duty”.
Sarah is still getting platelet transfusions and nose bleeds. The doctors have determined that the swelling, and low oxygen saturation while sleeping, is due to reactions from the blood product transfusions. We are going to reduce the red blood cell and platelet transfusions to the absolute minimum we can manage. This should minimize her swelling and her low blood oxygen readings when she sleeps. It will also reduce her bodies’ likelihood of growing dependent on the transfusions and lengthening the time it takes for her body to do the heavy lifting.
We don’t hear anymore talk about VOD, so we think that scare is behind us. We will check on her bilirubin count later today though. Sarah is only slightly puffy from fluid retention and she hasn’t had a fever for several days. Please keep praying on this one.
The assessments of her CAT scans last week came out clean. No issues with her lungs and nothing negative showed up from her head scan.
Sarah’s ANC was up to 270 today. That was awesome news. That’s up from 150 last Thursday. We need her ANC to be above 500 for 3 days to be a candidate to leave the hospital. Her white blood cell count was also up (490). Now that it’s above 300, they’ll check her ANC every day.
I attached a graph of Sarah’s WBC and ANC progress to date. Sarah’s engraftment looks like it began sometime mid-last week. Click on the image at the bottom to see a larger version.
The targets for Sarah to go home:
1. ANC >500 for several consecutive days
2. Eating and drinking “enough” on he own
3. No longer dependent on intravenous drugs for pain management
-Ben
Matt 14:35
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2 comments:
Dear Ben and Susan:
We are still here thinking of you and praying for all of you everyday. We so wish there was something more we could do for you. We love you all.
Uncle John & Aunt Fran
Praise God for the increase in the ANC! Things appear to be moving in a positive direction...to God be the glory!
Thank you so much for the before picture. Sarah looks so much like Susan did as a little girl... It brought back some memories of years gone by.
We contiue to lift all of you in prayer.
Love,
Kay in NC
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